Hi everyone,
This is my first post but I have been gathering much info from all your posts during the past few days in readiness for my GP appointment today.
I have had tingling in my hands,arms, feet and calves for almost 9 months now, I have repeated this plenty of times to my GP, other symptoms include tinnitus, heart thumping, smell and taste impairment. I also have Psoriatic Arthritis.
At the GP's today I was armed with paperwork which included the recommended advice from BCSH and the UKNEQAS B12 alert, Naturally he wasn't very interested in these.
A few of my blood levels include 179 serum B12, 2 folate and 103 mcv.
Also had intrinsic factor result of ok no further action but of course this could be a false normal ?
After a little cajoling he is starting me on B12 injections tomorrow and has given me 5cg folic acid to take.
A couple of questions please, I read that a blood sample should be taken and stored for MMA before treatment begins in in the event that I have no improvement how is this done ?
Also read that the B12 should be done before starting the folic acid, Why ? My GP reception says " well we always give them together "
TIA
As long as you are getting the correct loading dose of course, so check that. 
"Also read that the B12 should be done before starting the folic acid, Why ? My GP reception says " well we always give them together ""
It's a little bit confusing, but it is actually just fine to get them together. The real risk is if a doctor assumed there was a folic acid deficiency and treated that alone without any treatment for a coexisting B12 deficiency. If a patient shows macrocytic anemia (which is caused by either folate or B12 deficiency) and a doctor gives the patient just folic acid, the macrocytic anemia will improve. However, if the patient is really B12 deficient the folic acid will not treat the nerve damage that occurs with B12 deficiency. So the recommendation to give B12 first is really just an attempt to keep from missing treating the real problem.
That was really rambling, but I hope it makes sense.
Thank you for your prompt reply and perfectly understandable explanation G.
As you can see from my mcv I do have a bit of macrocytic anaemia going on ....I think ? From your explanation b12 and folate deficiency can cause this, funny that the GP never mentioned this and that it was all down to the alcohol I was consuming lol, he made me feel as though I was an alcoholic when in fact all that I do is enjoy a sociable drink of a couple of pints on some evenings.
You have B12 and folate deficiency, and that's why the MCV is high. So yes, it could be macrocytic anaemia (depending on Hb, but macrocytosis it is) Folate alone can, besides hide the anaemia and therefor diagnosis of B12 deficiency, increase neuro symptoms. I hope you are getting the right loading dose of B12. That the intrinsic factor is negative does not rule out PA. MMA does not have to be tested if B12 deficiency is clear. Shame it took 9 months to get diagnosed..get well soon!
If I have macrocytosis what other symptoms would you expect, I also have unexplained pain and fluttering in my left side and I am constantly red in the face down my chest and into my groin area, I go very red after a meal ?
Will the b12 and folate treatment bring my mcv back into range ?
Apologies but in my original post I forgot to say that I have been on ppi's for a good while so I think my lack of b12 absorbtion is more likely to be this than pa (hopefully).
As for the loading dose tomorrow I have to admit that as I am at the start of my treatment I haven't a clue !! What should it be ?
Many thanks for you help so far.
See the info I posted in the pinned posts on the start screen. A lot of the info is on our website pernicious-anaemia-society....
Symptoms: pernicious-anaemia-society....
You should be getting frequent injections to start with, from alternating days till at least once a week. (depending on doc and symptoms)
If you've been on ppi's more afew years, the yes, that could be the cuase. Question is if it's the only one. Besides you're taking those for a reason, gastritis?
Yes, the B12 and folate will bring your MCV down in a matter of weeks, very quickly. Bloodvalues usually get back to normal quite fast, the often symptoms take a lot longer to go away(unfortunately)
B12 is used by a number of processes in the body and it can be very difficult to unravel which process is going wrong and causing the symptoms. Macrocytosis will make your blood less efficient at carrying oxygen around your body - which would/could cause lack of energy, fatigue, dizziness and a whole raft of other symptoms. However, B12 is also used to maintain the lining around nerve cells that enables them to carry nerve signals properly which can affect the nervous system. The effects on the autonomic system (which controls things like breathing that we do without thinking and things that we do semi-consciously) may actually mimic some of the effects of macrocytosis as your cells think they aren't getting enough oxygen. B12 is also used by the processes that release energy in muscles so can/will cause muscle weakness. Some symptoms of B12 - eg pains in feet and legs - may actually be a combination of two of these - effect on nerve cells and the muscle weakness leading to fallen arches.
Macrocytosis occurs because there isn't enough B12 and/or folate in your bone marrow to ensure that new red blood cells form properly. It will be corrected as old blood cells are replaced by new blood cells that have formed properly. This happens as blood cells die. Red blood cells live for around 120 days so it will take several months to be corrected.
The symptoms of low stomach acidity are very similar to high stomach acidity and low stomach acidity is frequently mistreated as high stomach acidity ... just making the situation worse as far as B12 absorption is concerned. PA would result in low stomach acidity so I wouldn't rule it out as a factor.
The intention of the guidelines was to prevent a situation in which someone was treated with folate only though both folate and B12 are low however it is poorly worded and hence the confusion. You need folate in order to use and process B12 so if you are deficient in both you need both at the same time.
B12 deficiency can affect your autonomic nerves, which among other things control skin temperature by dilation/constriction of blood vessels. After you eat, blood rushes to your GI system to aid in digestion. Your autonomic nerves try to adjust for losing blood from other areas in your body. Apparently they don't function properly and are overcompensating by dilating too much; hence you turn red. You may be better off by eating smaller meals more frequently.
Nerves can heal, but it takes a long time (a year or more). Make sure you get sufficient B12 so your condition doesn't worsen. Buy it over the internet and self-inject if you have to.
Does this redness hurt at all? If not, consider yourself lucky as there are a number of people who find this condition quite painful. It's called erythromelalgia, google it. It can affect any area of the body but is more commonly found in the extremities (feet and hands). I have it in my feet, it was triggered by a B12 deficiency caused by pernicious anemia.
Thanks for this Tracy, I will look into this.
I don't have red hands or feet but my ankles throb although this was eased during the loading injections.
The redness is not always there but when it is, it is my face, chest, stomach and groin areas.
Earlier this year I saw a private consultant Haemotologist to ask about the possibility of Polycythemia but he seemed to think not.